A part of marriage is caring for your spouse when they are sick or ailing. Although a spouse with dementia may not visibly appear sick, this person is suffering from memory loss and confusion. Watching your spouse’s mental abilities deteriorate may be difficult. You may feel uncertain about how to help your spouse with dementia and how to adjust to this major life change. By redefining your marriage and accepting your new roles, asking for support, and taking care of yourself, you can handle this new season of your life.

Steps

Part 1

Adjusting How You Look at Your Spouse

1

Accept that your marriage will change. Know that your marriage will not be an equal partnership anymore. Eventually, you will have to take on all of the responsibilities of managing your household, caring for your family, and even helping your spouse with the smallest of tasks. Your role as spouse will gradually transform into the caregiver, or even “parent” in the relationship.

For instance, you will likely have to do all of the household chores, make all of the decisions regarding your family and home, and provide constant supervision of your spouse.[1]

2

Educate yourself as much as possible about the particular form of dementia that your spouse has. Knowing what to expect going forward goes a long way in preparing you for the different stages as they occur.

3

Understand your spouse’s behavior isn’t intentional. People with dementia often take on new personalities and may lash out at their spouses and caregivers. Not taking these behaviors personally is difficult, but necessary. Understanding the cause of the aggressive behavior may help you to not become offended by your spouse, and help them in the process.

Take a look at the situation and what is really making your spouse upset. This is where really knowing your spouse comes in handy. For example, your spouse may not appreciate being fussed over or having you speak for them. Engaging in an argument will likely only make the situation worse. Instead, try to shift the focus away from the matter, while speaking in a calm and reassuring voice.[2]

For example, if your spouse says “I really don’t need you standing over my shoulder all day long. Go away,” rather than arguing, say “I’ll give you some space, then. But you can expect me to check in on you every half hour.”

4

Know that feeling resentful of your spouse is common. When you said your vows, you probably didn’t plan on marrying someone you would have to take care of completely. You likely envisioned a relationship in which you both put in equal amounts of work and when this doesn’t happen, resentment is often common.

Feeling angry and resentful of the situation is normal, but if you let those negative emotions become directed toward your spouse, you will likely make your new reality even worse. Instead of getting mad at your spouse, get mad at the disease.

Write down a list of what you are most upset about, including changed retirement plans, missed vacations, and the like. In a few days, look at the list again and determine whether these topics are really that upsetting and if there are any alternatives. For instance, if your spouse is in the early stages of dementia, you can likely still travel and do the things you always planned together.[3]

Your spouse may say things that hurt your feelings so it is important to remember that those with dementia are not intentionally saying hurtful things. Your spouse's reality has changed due to the disease, so although you can clearly tell what is real, your spouse cannot. You must try to learn over time when "the disease is talking" to minimize your own feelings of anger or resentment.

5

Understand that intimacy may change. Because of the cognitive decline of your spouse, you may not be able to experience the emotional and physical intimacy you once did. Along with physical impairments, your spouse may become depressed, which can also affect their sex drive. Additionally, you may not feel attracted to your partner anymore because of these changes. Don’t feel guilty about this loss of attraction; you can find other ways to connect.[4]

New ways of connecting may include reading books together, going for walks, talking, and experiencing things together that you couldn’t before due to other obligations. Take advantage of all the time you spend together.

6

Focus on the positives. Although lots of things have changed since your spouse developed dementia, if you think about it, much is also the same. Perhaps your spouse always had a sideways grin when they were caught doing something naughty like drinking from the milk carton. Or, maybe your spouse still dances wildly to their favorite music like they did when they were younger. Take note of these small ways in which you still have your spouse rather than focusing on all that you’ve lost.

Being positive also means being optimistic about the future. Dementia is not a death sentence.[5] Many people continue to lead healthy, fruitful lives with this condition. Of course, some modifications may need to be made, but your spouse can likely continue to engage in many activities that they once enjoyed.

Part 2

Relying on Others for Help

1

Ask friends and family for help. Taking on the role of caregiver is an overwhelming and stressful concept for many spouses. However, understand that it is OK to ask for help. You don’t always have to do everything on your own, and asking help from your children, friends, siblings, and in-laws isn’t a sign of weakness.

Something as simple as asking someone to make you dinner once a week or helping you to clean your home can make a huge difference in your emotional well-being. Chances are, your loved ones will be more than happy to help.[6]

Reach out by saying “Hey, dear, I know you have a lot going on, but I could use some help with your dad. Could you come by one day this week and sit with him while I run errands?”

2

Join a support group. No one understands what you are going through better than those who are experiencing it for themselves. Joining a support group allows you to talk freely about all of the emotions you are feeling and receive feedback and encouragement from those who are in the same place as you.[7]

You don’t have to worry about receiving criticism or judgment from those in the support group, so you may be able to discuss exactly how you feel about these changes and your new responsibilities for the first time.

3

Hire a professional caregiver. Know that it is not a sign of weakness to ask for help from a professional. Along with caring for yourself, you now have to take care of someone who is likely difficult, emotional, and physically and cognitively impaired.[8]

Hiring a caregiver to give your spouse a bath, prepare meals, give medical care, and perform other tasks can help take some of the pressure off of you and make your life easier.

Part 3

Taking Care of Yourself

1

Seek professional help, if needed. Caregivers are often under constant stress and pressure, and it is common for them to experience depression and anxiety because of it. Experiencing grief over your changed spouse may also cause you to feel down. Talk to a doctor about seeking therapy or taking prescription medication to help treat your issue. Doing so will enable you to be in better mental health to take care of your spouse.[9]

2

Participate in hobbies. Caregivers commonly lose touch with activities they enjoy, as they often feel they don’t have time for anything else except looking after their spouses. In addition to adding to the level of resentment you may feel, depriving yourself of activities you enjoy can also negatively affect the way you take care of your spouse. Make time to engage in your hobbies, even if it means asking someone to relieve you for a few hours a week so that you are able to participate.

Taking care of your mental, emotional and spiritual needs is just as important as caring for your spouse. Fortunately, many hobbies can be enjoyed without even leaving the home, such as reading, knitting, doing yoga, painting, meditating, and spending time with growing grandchildren.[10]

3

Exercise to relieve stress. Exercising can help your emotional and physical well-being, which is beneficial to both you and your spouse. Spending just a few minutes a day walking, running, participating in tai chi or yoga, or riding a bike can make you feel better emotionally and physically.[11]

You may be able to exercise with your spouse during the early stages of dementia, which gives you a chance to connect with your spouse and support their physical and mental well-being.

4

Self-care in general is one of the most important things a spouse needs to do when they become a caregiver. Some spouses feel guilty because they cannot manage everything. Keeping yourself healthy is the best thing you can do to help your spouse.[12]